Nothing about them, without them: Including youth in transition services for adolescents living with HIV

No one born since 1985 knows a world without HIV. Nearly half of the world’s population is under 25, and far too many of these young people know all too well how the virus can devastate a family or community.

A Ugandan adolescent stands fireside. USAID and other global partners are increasingly engaging youth in developing policy and programs to improve health outcomes among young people. Photo credit: Robin Hammond, John Snow Inc.

A Ugandan adolescent stands fireside. USAID and other global partners are increasingly engaging youth in developing policy and programs to improve health outcomes among young people. Photo credit: Robin Hammond, John Snow Inc.

Thanks to advances in AIDS treatment, a new generation of HIV-positive youth is surviving childhood and preparing to “age out” of pediatric HIV services—at a critical moment in their lives.

Youth living with HIV face many challenges. Not only are they—like others their age—exploring new romantic and sexual relationships, but they must also learn to manage their own HIV care.

Without proper support, many young people can become overwhelmed, a response that can challenge adherence to AIDS medicines and lead to negative health consequences. This is why it’s imperative to create health services that are appropriate and accessible for youth living with HIV.

Young people have an important role to play in HIV program and policy development. They can provide unique insights into how best to reach their peers and which messages resonate with youth living with HIV and AIDS.

Policymakers and program staff would benefit from engaging young people living with HIV early in the planning process. Offering them a seat at the table enhances the overall dialogue and gives young people the opportunity to offer insights unique to their experience.

Some government agencies and multilateral institutions, including UNAIDS and PEPFAR, are already taking steps to involve youth. For example, UNAIDS’ CrowdOutAIDS initiative provides a powerful model of how to engage youth by using social media to involve them in revising the agency’s youth strategy.

PEPFAR has also embraced this approach. Earlier this year, PEPFAR, USAID, and AIDSTAR-One hosted a meeting in Botswana to discuss ways to include young voices in developing programs and policies that can help youth as they transition from pediatric care to adult treatment.

Meeting planners asked each participating country to include at least one young person in its delegation. The 11 youth participants—all under 24 years old—come from communities affected by HIV in Botswana, Kenya, Mozambique, Namibia, and Zambia, and all are passionate about tackling HIV issues in their countries.

These young delegates co-moderated each of the plenary sessions with a PEPFAR representative. They actively participated in the meeting’s small working groups, and voiced their opinions on policy, services, and the use of social media to reach other young people with important HIV messages. Through AIDSTAR-One’s social media channels, youth also used Twitter to capture their suggestions and observations.

The youth presence at the meeting provided a constant source of energy and motivation. Many adult participants said the youth panel on the first day was the most powerful session all week and helped frame discussion and recommendations around transition services for adolescents living with HIV and youth-friendly services overall .

Achieving the goal set out by Secretary of State Hillary Clinton last year of reducing new HIV infections in children and achieving an AIDS-free generation requires addressing the needs of youth with services that are delivered in ways and in places that are accessible, welcoming, and supportive.

We must continue to involve youth in the design, delivery, and evaluation of these services. Truly, nothing about them, without them.